Should I go there?

We really need to get to the bottom of why this is so difficult. Somebody's lying.

Supposedly the problem stems from:

The company who makes the BAHA, Cochlear, says it cost X amount to make; Let's say $6,000. The Insurance company says
"'We know that's not true! We will only pay $3,000!"
Then the clinic/doctor office who actually sells the BAHA to the patient cries
"We have to pay Cochlear 6 grand but only get 3 grand from the Insurance. We lose $3,000 with every purchase. We can't afford to file with Ins anymore. We can only sell directly to patients."

It shouldn't be that hard to prove how much $$$ goes into each BAHA produced, including recouped research cost. So either the manufacture isn't able to prove it, the Ins is conveniently in denial about it, or the clinics/doctor office is trying to make a huge profit off a giant mark up. Or maybe a little bit of all three.

Please people, we need to get together on this.

Schools out

301 Days later The BAHA Intenso (this is the one you should get unless it's going to be implanted in the near future) is on it's way. BCBS negotiated rate was 3,000, they paid 1,000 and we would have had to pay the rest but Medicaid is our secondary Ins and covered the rest. The Big Picture, The Whole Point... DO NOT WORK with a clinic that will not file with your Insurance, and if you can, hold out for one that will even file with Medicaid. They are out there, regardless of what some clinics will tell you, and they deserve a humanitarian award.

There are a couple reasons why it took from my last post till now for the ENT to write a letter of necessity. Some of it was legitimate, but most of it was people being too busy to 'stay on top of it'. So once again, you, the parent, must stay. on. top of it.

First day of summer. Brenna wanted Gus to build her a house for her cats. So he did out of pillows. And he named Brenna Verillia and Garrett Bugger. Then they ate pb and j that Gus made me cut with cookie cutters.



He's in charge now. It's going to be a fun summer.

We'll see where that takes us.

Assistive Technology apparently only counts in hand grenades and horseshoes. What they really mean is assistive technology that's not expensive, like a pair of glasses. They say there is just no budget for something like a BAHA. But they did some research and found out that they could sell me a BAHA at cost which is like $3500 and then will help me organize a charity fund raiser in my local town. So, while this is a Plan Q, it's still a lot better than the $6500 I would have had to pay to the clinic and I sure appreciate the thinking, digging and paper work they had to do to be able to provide me with the opportunity to buy through them at cost. Did I mention it's at cost? That means they're not making any money off of helping us! What a novel idea!

They also got me in touch with a mom that got her son a BAHA soft band without a lick of trouble. Problem is, she doesn't know why it wasn't a problem for her. She didn't know that it's a battle for most. She has the same type of insurance, BC-BS, and even uses the same ENT doctor as Garrett does, but out of a different hospital ( his Ft. Worth office out of Cooks Children's hospital, instead of his Dallas office out of Medical City). So I made an appointment with the same doctor in the new location and low and behold, they will file with insurances.

Now it's back to fighting with our insurance. The clinic out of Cooks filed with our insurance, and sure they pay for BAHA soft bands, but only for adults 22 years and older. Random much? So now the audiologist is getting the ENT to write a letter of necessity to our insurance. We'll see where that takes us.

That's where I'd like to be

Good news. Sure enough, the very clinic/ENT/Audiologist that is evaluating Garrett for the BAHA soft band, has an 'extra'. So we can drive up to Dallas tomorrow and pick it up. I'm sure glad someone on my BAHA Yahoo group suggested I ask. Now my boy can hear, at least for as long as they'll let us borrow it, until we work out all the mess of actually buying one. from. them.

And more potentially good news! ECI seemed familar with the IDEA Act. Now we just have to wait for a few more weeks for their audiologist to evaluate Garrett and determine if the laws were in fact written to help him. Cus you know, maybe the Board of Education had someone else in mind. Do I sound bitter today even with all this good news? Sorry, I could probably use a bubble bath ... or even just a 3 minute shower. That's where I'd like to be.

I'm still there

So I'm still only about half way through 'intelligence reconnaissance' trying to gather as much ammo as I can for my next meeting with ECI this Thursday. So far I've found one little tiny sentence that might help me. I found it in section "Early Intervention Services, Part C". It states

"Specific early intervention services include:
...
13. assistive technology devices and assistive technology services; and,"
...

So I might can use this as grounds that they need to provide some "assistive technology" in the form of a BAHA soft band. But I will have to pull a 180 about it being an implant because the Board of Directors excludes implants! Well, for this instance, we should certainly be able to consider a BAHA soft band as NOT an implant. We'll see how much resistance I come up against.

In the mean time I got some excellent advice/news. Sometimes it's possible to find someone, somewhere that might loan us a BAHA soft band until we can buy one. So I've been calling every Childrens Hospital in Texas (Dallas and Houston) but they haven't called me back yet. Hopefully I'll find some more ammo in the IDEA documents soon and the hospitals will call me back with some good news. That's where I'll be tomorrow.

That's where I'll be tomorrow

Today is the official start of my grueling battle to get my son some hearing. I am told this is going to be an epic bloody ordeal. Isn't that terrible? That $6,500 is the difference between a kid growing up with normal development, speech and sound? To communicate? Shouldn't this be a given? Where not talking millions of dollars per kid here. Greedy assholes. Anyway,

This is what I've done and learned so far (for a child under 5).

First you have to find out what the need is. Get a CT scan and talk to an ENT that does cochlear and BAHA implants. Can they repair the outer and middle ear (three ossicles, namely, the malleus, the incus and the stapes)? If not, a BAHA soft band is probably the best way to go. Have an Audiologist check the Auditory Nerve with a full sedated ABR test (not just a simple ABR like what they do with a newborn screening). Nerves are good? Great! Now get ready for some fightin'.

Talk to your insurance and see how they cover BAHAs, NOT hearing aids, BAHAs. A BAHA is an implant and shouldn't be considered a simple hearing aid. Put on a smile and talk and talk and ask to speak to supervisors until you get someone who can understand that it's NOT a hearing aid. Have you gotten the answer you wanted? Good. Now be prepared to gnaw your own knee caps off because you've probably just wasted your time. Most (read ALL) companies/clinics that sell BAHA soft bands won't file with any insurance anyway. So whether your insurance covers it doesn't really matter. You're still going to have to come up with about $5,000. So what do you do? Beg. And the Let Them Hear Foundation is your single most important friend at this point!

This is where I am today. I have called Let Them Hear and they suggested that since my son qualifies for and already receives (as yours should too) Early Childhood Intervention (ECI) that they may pay for the rest of the BAHA soft band. The Board of Education wrote laws to protect children with disibilities, the Federal IDEA act (Individuals with Disabilities Education Act) . Go to the Let Then Hear Foundation web site, under Patient Services click on Idea.LetThemHear.org where you will have to register and maybe even pay a membership. From there you're on your own because every ones situation is so different things start to branch off but I can tell you that if your kid is in the school system you'll click on IEP (Individualized Educational Program) or if he/she is too young for school you'll need to click on IFSP (Individualized Family Service Plan). That's where I'll be tomorrow.